Hello Chiari…It’s Me…Jane…

Yesterday…wasn’t my best day…I woke up still feeling kind of…fuzzy headedwhich had nothing to do with my coiffure…although…now that I think about it…that would have applied as well…

It had all to do with the fact…that a passing weather front had decided to…stop and stay for a few hours…which…sometimes…activates…my Chiari symptoms…

Thankfully…those pesky fronts…rarely cause the headaches that they did before my decompression surgery two and a half years ago…it’s more of a feeling…that…anything…and…everything…is just too much trouble…

The bed went unmade…the blog unwritten…the dishes unwashed…and…I rested until early afternoon…when…the rain came and the temperature dropped…and…suddenly I felt great again…

But…the bed went unmade…the blog unwritten…the dishes unwashed…well…I had made it that far into the day without doing them…I didn’t see the point in starting then…and I had other…fish to fry…as Mama would say…

I’m writing this today…because…there isn’t a lot of information about recovery from…Chiari I Malformation…and…that’s partly because…until a few years ago…many people…doctors included…had never even heard of it…although with MRIs…it is becoming a more common diagnosis…so…there hasn’t been time for a lot of studies and research into the long term effects…

The other reason…is that there is no one predictable course…everyone is different…as would be expected considering the nerve damage the Chiari causes…also…any co-existing conditions the patient might have…

I get numerous hits on my blog…from people who are seeking information…what to expect from surgery…what to expect in recovery…what to expect from life…

I will say for those of you who are seeking such information…my herniation was significant…35mm…all the way to T-1…and I had a thin syrinx from C-1 to C-7…I was 56 years old…my primary symptoms were…headaches…numbness of my face, arms, and hands…and increasing episodes of choking…and overall just not feeling quite right…the syrinx was detected by a Chiropractor who was looking for a ruptured cervical disc…I then went to a Neurosurgeon for treatment and decompression surgery…

I would love to be able to tell you what to expect…however…I can only share my own experience…which has been remarkable by many standards…but…slow and cantankerous…by mine…

I think…I know…I wanted it to be like my tonsillectomy…once it was done…my throat was sore for a few days…and then…I was back to my old self…

But…it didn’t happen that way…I guess…it’s just not the same with…brain tonsils…I was off work for three months…and…honestly didn’t feel like going back then…but…I did…knowing that I only had to survive two months before having…two months off for the summer…I ended up working four days a week…for the remainder of the school year…

For the first six months or so following surgery…I had a low grade fever…every day…which was controlled by taking ibuprofen…we never found a cause for it…no infection…or anything like that…probably just my brain parts readjusting to having a bit more room…

For the first year…I also had almost constant…low grade nausea…and craved…carbs…and…ice cream…which wasn’t the diet I’d planned for weight loss

The next year was better…but…I continued to be exhausted…not even having the energy to exercise…as I had hoped to do…

Last summer…I went gluten and sugar free…and started to feel better…this past year was a much better year…I had more energy…my thought process cleared…well…as clear as it will probably get…LOL…and…I felt like a person again…I was able to begin an exercise program…and although I didn’t push myself…I did exercise…

I continue to have some numbness mostly of my right arm…but…it’s not severe…I can deal with it…my neck gets tired when I sit at the computer for too long…which is almost every day…between writing and working as a school nurse…but…I’m learning to take breaks and change positions often…which helps…

Overall…this summer has been wonderful…with the exception of a few…weather days…I feel good…I’m enjoying life again…I just released my second book…Becoming Bertha…and am considering what to write next…sometimes…I think I should write about…Chiari…but…then again…I just did…

Jane

PS…please feel free to leave comments or contact me via the contact page…if you have questions…

Two Years and Counting…

I’m celebrating today…it’s my friend’s birthday…but…that’s not why I’m celebrating…and…at our age…I’m not sure she is either…but regardless of birthday wishes…I’m celebrating my two year anniversary…

That’s right…two years ago today…I had posterior fossa decompression…due to Chiari I Malformation

I remember getting ready for the surgery…it was such a surreal feeling…I think the main thing was…not knowing what the outcome would be…not really even knowing what to expect…there isn’t a lot of medical information out there about what to expect following the surgery…

I think that’s because…they simply don’t know and can’t really predict…how anyone is going to do…it’s pretty individualized…and depends on the extent of nerve damage prior to surgery…and other co-existing conditions…so…they just don’t say…

So…that’s why I write about my Chiari experience from time to time…just in case there’s someone out there…who needs to read about it…

Honestly…from my instant gratification standpoint…it seems to have been a slow recovery for me…although I went back to work at three months…I honestly didn’t feel like it…and I struggled the two months I worked until summer vacation…

The next school year was better…but…I still didn’t feel that great…and by early summer…just before eighteen months out from surgery…I thought this was just gonna be the rest of my life…foggy brain…numb arm and face…frustrations and aggravations…

Then…suddenly…at eighteen months…things seemed to rapidly start getting better…the numbness improved…I had a great MRI…showing continued improvement…and…the fogginess was gone…

On the fogginess…it was the same time that I started eliminating processed carbs…yes…and sugar…from my diet…so…I can’t be sure…what helped…if it was just time…or…no carbs…but…the good thing is…feeling better is definitely a motivator to keep me following my new dietary lifestyle

Fast forward another six months…and it’s today…and…I continue to improve…my stamina is better…until a couple of months ago…exercise made me feel worse instead of better…I’m actually building up my sick days again…haven’t had to take one so far this year…

I did read somewhere that full recovery from the surgery could take up to five years…at the time I thought that was crazy…how could it possibly take that long…but…now…I realize…it is a slow process…but…like the tortoise…I’m winning the race

Jane